I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Thursday, October 3, 2013

Relapse

It has been a rough couple of weeks.

The Ramers have been terrific. Brent has perfect attendance at school. We have been getting our lives back on track. I might even get to see the inside of the kids school rather than the inside of their various hospitals. It has been great.

We enjoyed a fantastic day on Sunday via Flashes of Hope, sponsored by the Browns in honor of pediatric cancer awareness month. Dan and the kids got to go down on the field as the teams warmed up. We watched the game with two other families from the corporate suite. The Browns won. The weather was perfect. We parked under the stadium with the players. Fabulous day.

But for me, there was something of a shadow lurking over this all, because in LFS land, it has been positively raining relapse. A friend who messaged me frequently about her osteo relapse options, went into hospice. Others have been struggling with their second and third cancers. And most devastatingly, a dear mutant friend announced that they found mets in her lungs and bones. Perhaps sarcoma, but likely breast cancer. There has been some swearing in my head. I have vile things to say about cancer.

And, amongst all of this, Lauren has been getting headaches. They started out fairly sporadic. They happened only at school. But there has been a definite uptick in the frequency and the intensity of them. Dan and I were not thrilled about this. We were nearing on scans, and were thinking between us that the brain MRI in two weeks couldn't come soon enough.

As Lauren had more headaches over the weekend, I made plans to email her oncologist. But first thing Monday morning, my phone rang. The local Make a Wish chapter had a possible opportunity for Lauren, which felt both exciting and ominous. While I had hoped to move her MRI up for my own peace of mind, now I really needed to, for this wish opportunity. I emailed her team, advising them of her new and concerning symptom. They forwarded it on to neuro oncology.

When she came home after school on Monday in tears over a headache, I put her to bed, and called oncology. Phone calls back and forth...and by the end of the day, she was scheduled for an MRI first thing Tuesday morning.

So, I checked Lauren several times overnight, but she slept soundly. Lets just say, I did not. Tossing and turning. At 2am, I woke to discover a recent email from my geneticist. My friend had also emailed. I had too many thoughts swirling in my head. I couldn't sleep, but I couldn't do much else either.

We battled morning rush hour traffic to a satellite of University Hospitals. Lauren was great. I was just simply jumping thought the next hoop, grimly, because we had to know what we were dealing with. We checked in at radiology and began to wait.

Make a Wish called while we sat there to confirm the dates for her wish. I knew that we would do her wish regardless of the scan results, and am grateful for the opportunity. But it would feel very different, if we were traveling with the carry on baggage of another brain tumor, and a return trip to oncology on the itinerary.

Lauren changed into a gown, and I was allowed with her in the back, to watch her scan. The tech stopped the MRI to stick her and give her IV contrast, then put her back in the tube. He was a one man show in this small outfit. I resumed my waiting, trying not to think ugly thoughts. Make a Wish called again to confirm more details. I wanted to throw up, completely distracted by the fact that they were making images of my daughters brain, and how that information would determine the course of our lives.

I shared the details of Lauren's wish with the tech, in an effort to distract myself from awful thoughts. I imagined how excited she will be to hear this news, having been patient so long. He wished her well, and finally went in to pull Lauren out of the tube. She quickly changed back into her clothes and we left.

Before we could even get on to the highway, my phone rang, a number I recognized from the hospital. Dr. Sterns, the neuro oncologist said that he was looking over the scans, and that they appeared unchanged from her last ones. I think that he must have been looking at them live from UH Main Campus during her scan. I am so grateful for technology. I am grateful for the clean scan. I am grateful for the phone call.

I could breathe.

Lauren texted Dan to inform him of the good news while I was driving: "Hi daddy, its Lauren. Just wanted to tell you that there is nothing wrong with my totally awesome cancer-free brain." We had breakfast together, at what she now calls our 'good news restaurant,' and I took her home to get some rest. I headed out to the main hospital for my own appointments and errands, now very happy with my day.

The very first person I lay eyes on upon arriving at UH was Lauren's neurosurgeon. I swear, if I didn't already know her MRI was clean, I would have thrown up all over him. Instead, I giggle to myself and text Dan about it. These things feel so different without the uncertainty.

I know, in my head, that cancer isn't contagious. But the series of sad and troubling announcements from my friends had the universal effect of sending everyone in LFS world scurrying to "get their shit checked out," forgive my language. Because, while we might laugh inappropriately at cancer, at oncology, and the horrible things we are required to do, we all have a very healthy respect for LFS (Ha! Isn't that an ironic turn of phrase?) and the potential for cancer. Neither LFS, nor cancer, is anything to mess with.

The relapse storm just serves as a reminder. An alarm bell to anyone who might be tempted into complacency, which we all are. Everyone is busy with life, and everyone with LFS wearies of time in hospital. Furthermore, even for us, there are normal things, not just cancer. It is just hard to know what to worry about.

A great deal of the research to date with LFS centers on the psychological implications of knowing your status, what I refer to with much irritation as the "how do you feel, know that you know?" research. It is a balance, having due diligence, and living. With LFS, we start with 'rule out brain cancer' and work our way back to 'adolescent onset migraines.' We have to, given our genetic circumstances.

And we high five migraines in this house.

So at the end of my long day at the hospital, I returned home, and Dan and I gathered together the kids to talk as a family. Our talk is different than other talks that we have had. The talk that I worried about having. A talk that my friend was having with her four beautiful children. We celebrate migraines in this house, as cancer averted. And we get back to the business of living, and embracing the blessings that each day offers us.

And we shared that Lauren has been granted her wish. Hollywood is going to Hollywood. She and her totally awesome cancer free brain are going to be in a movie.

1 comment:

A wonderful testament to being grateful for the lesser of two evils. It is a strange, remarkable world to live in. Thoughts and prayers to the warriors battling, and lots of joy hearing about Hollywoods wish coming true.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.